A weird week. I can not describe it otherwise. First of all because, as a direct result of GIST, my guts constantly rumble again. As an approaching thunderstorm. Much more emphatically than was the case with Sutent (now I’m back on Gleevec I can better assess the differences in side effects). However, I assume that this is because the drug is active doing “something” and have therefore decided to consider this as a good sign.
After a long preparation we could set the GIST Reality blog “live”. It was thoroughly tested and any bugs we could find were taken care off, and the manual was on some points adjusted and clarified. We were ready.
But first we sent a detailed email to a number of GIST organizations and contact groups, in which the intent and purpose of the blog was explained. And upon this came only positive responses. Which strengthens our in the belief that we realy fulfil a need.
Meanwhile a personal internet domain was registered and the next step was to activate the GIST Reality blog. After which a message was posted on several Facebook pages that focus on GIST including, because that possibility was indicated by themselves, through the mailserv of one of the GIST organizations. And once again we received many positive reactions.
And, unexpectedly, one indignant response via email from a GIST organization which was followed by a phone call. It soon turned out that it had to do with an internal miscommunication, a misunderstanding. Problem solved and they even promissed to come up with a proposal for further cooperation. Great!
And soon several people and from different countries registered as participants at the blog. Only, would they also actually write something? But at that we were not disappointed. At this moment there are already contributions in four different languages. And with that it turns out that by using Google Translate you can easily understand all those stories.
Stories of GIST patients. How they live and what they experience and feel. All unique and very personal. But because of that, very informative. And also easily searchable via keywords.
And you get, when you sign up for it on the blog, in addition, within a day a newsletter if someone has posted a message in the language(s) you prefer. More easily is almost impossible…
Although you can leave comments on a blog post, it is – deliberately – not intended as a discussion program. For this we refer to the different GIST organizations and forums. What is possible however, is that the author of a blog post (but then privatly) can still respond to someone. Because we wanted to preserve the possibility that as a writer, you must, if desired, still be able , to give a reply or explanation to anyone.
And then finally in my personal GIST story, the week ended with an unexpected setback. In spite of the previous surgery, my fistula has yet returned. I have again to live (and sit) with a sore butt.
Fortunately, we see this specific surgeon next week for a checkup. And I’m very curious to hear whether there is warranty on its work.